What is Paediatric Palliative Care?

Paediatric palliative care is a holistic approach aimed at addressing the complex issues related to the care of children and families facing chronic life-limiting illnesses. The needs of children are unique and often quite different from those of adults receiving palliative care. This review article outlines some of the salient features of paediatric palliative care which are relevant to all professionals caring for children with life-limiting illnesses in their practice.

 

What Are The Unique Characteristics of Paediatric Palliative Care?

The term "paediatric population" refers to children from birth to 18 years old. Each stage of childhood has unique developmental needs and capabilities. Children have different educational needs and perceptions of illness, death, and dying that are influenced by their developmental level and cultural traditions.

 

Symptom Assessment

Symptoms can present differently in children, and symptom assessment can be more challenging, especially in pre-verbal children.

 

Medications and Dosage

Medications and dosages are more complex in children, as dosing is largely weight-based and side effects may differ. Paediatric palliative care can be more emotionally draining on families and staff than adult palliative care.

 

Diseases That Commonly Affect Children

Diseases that affect children are distinct from those that affect adults, including congenital anomalies, genetic syndromes, inborn errors of metabolism, and other rare conditions that are not seen in adults. Unfortunately, many children with these conditions do not survive into adulthood.

 

What Are The Physical Components of Palliative Care?

The physical aspects of palliative care focus on addressing the tangible and often distressing symptoms that accompany serious illnesses. This includes pain management, symptom relief, and attending to various physical discomforts such as nausea, fatigue, and shortness of breath. The primary goal is to optimise the patient’s comfort and minimise suffering, ensuring their quality of life remains as high as possible.

 

What Are The Psychological Aspects of Palliative Care?

Psychological support provided in palliative care is tailored to the individual needs of patients and may include emotional counselling, communication and decision-making support, and coping strategies. Emotional counselling is provided by trained professionals such as psychologists and social workers, who create a safe space for patients and their families to express their fears, anxieties, and grief. This counselling helps patients cope with their emotions and find a sense of hope and meaning.

Palliative care teams also facilitate open and honest communication between patients, families, and healthcare providers, ensuring that treatment decisions align with the patient's values and goals. Patients are equipped with coping strategies to manage the emotional challenges they face, such as relaxation techniques, mindfulness, or support groups. By addressing the psychological aspects of care, palliative care helps patients and families navigate the complex emotional journey of serious illness with resilience and strength.

 

What Are The Spiritual Aspects of Palliative Care?

The spiritual aspects of palliative care recognise that patients have beliefs, values, and a sense of purpose that significantly impact their experience with illness and suffering. Spiritual care providers, including chaplains, counsellors, or religious leaders, engage with patients to explore their spiritual needs and provide guidance.

Spiritual care contributes significantly to overall well-being in various forms of end-of-life care by:

 

Providing Comfort

Spiritual care offers solace and comfort to patients, helping them find peace and meaning amid the challenges of illness.

 

Resolving Spiritual Conflicts

It assists patients in addressing spiritual conflicts or questions about the meaning of life and death, providing opportunities for reconciliation and closure.

 

Facilitating Important Conversations

Spiritual care facilitates important conversations between patients and their loved ones, helping them connect on a deeper level and find mutual understanding.

 

Enhancing End-of-Life Experience

For many patients, spirituality plays a central role in how they approach the end of life. Spiritual care ensures that these beliefs are respected and integrated into end-of-life care plans.

 

How Do You Get Palliative Care? 

To receive palliative care, it is essential to ask your doctor or healthcare professional about it. It is their responsibility to refer you to a palliative care provider. 

 

Preparing for Palliative Care Consultation

Before your consultation, prepare thoroughly by making a comprehensive list of your symptoms and how they impact your daily activities. Additionally, bring a list of medications you take and any relevant medical history.

 

Collaborating with Your Palliative Care Team

It is strongly advised to have a trusted friend or family member accompany you to your appointment. After your consultation, work closely with your palliative care team to develop a plan based on your symptoms, current treatments, and how your illness affects your mental health, daily activities, and family members.

The plan will be implemented in coordination with any other treatments you're receiving, and it should evolve over time as your needs change. If needed, the plan can also involve advanced care and end-of-life planning. Remember, your palliative care team is there to support you every step of the way.